Diagnosis & Treatment: I am an LPN working in a nursing home. In December 2008 I started pushing my med cart and noticed sharp pains in my arm. I knew that this was not normal so I went to the ER when I got off work. The ER doctor repeatedly asked me if I had fallen, twisted, or injured my arm. I kept telling him that I had not. He would not x-ray my arm at this time. He told me that is was a sprain and gave me Ultram and a splint to wear for 3 days. Before the 3 days were up my arm had started hurting worse and Ultram was doing absolutely nothing for the pain.

At the beginning of January I went to my family physician and he x-rayed my arm. Of course something showed up but my doctor wasn’t sure (or wouldn’t say) what it was so he ordered an MRI. At this point no one would tell me what was wrong and I had become very upset. After the results of my MRI came back my doctor called and said that I needed to see an orthopedic doctor because something showed up on my MRI and it was 4cm long and 1.5cm wide. The orthopedic doctor is the one who finally told me that it was a bone tumor but said that he was not qualified to take care of it so he sent me to UAB in Alabama. My appoint was Feb. 9th, and the bone tumor was removed on Feb. 10. It was a grade II chondrosarcoma.

Life Now: I am now in therapy because I was not able to pick up, or squeeze, or use my arm for anything. My next appoint is May 15th. This was all very disturbing to me because there was no history of cancer in my family. My husband and mother have been very supportive through this terrifying time in my life. I put it all in GODS hands and pray daily that it does not come back.

Diagnosis: During 1993 I bought a small trampoline for use at home. I’d read it was good exercise and was keen to keep fit. I started to use it daily and almost immediately I experienced an excruciating pain in my left leg. It was like a bee sting that lasted ages, so severe that it made me stop in my tracks and gasp. Once the pain had been triggered it didn’t go away – I intermittently felt it. I was no longer able to use the trampoline so packed it away and made an appointment to see my Doctor. He suggested I’d pulled a muscle on the trampoline – even though I knew it wasn’t that kind of pain. The pain continued and became more intense and more regular so that I was walking with a limp and could not walk any distance. It felt like a rat was gnawing the bone of my leg all the time. During this time (over two years) the Doctor kept fobbing me off and not taking my pain seriously. Then one day in complete despair I went to his surgery and refused to leave until he sent me for an x-ray. The x-ray showed a mass inside the bone of my Tibia. I then was sent from one specialist to another each misdiagnosing the mass. I had scans, MRI, more x-rays. Eventually having painfully tramped all over England seeing these specialists I was referred to Mr Steven Cannon (privately) in London. He recognised the mass for what it was immediately and said I needed urgent surgery.I had been feeling depressed about the pain and felt helpless despair but once it was diagnosed and was to be treated the depression lifted.

Treatment: Within a few days I was in hospital undergoing surgery. The tumour was Chondrosarcoma grade 1 and it was surgically removed in December 1995. The leg was not strengthened at the time as it was not thought it was necessary and it was also thought that bone cement might disguise a recurrence. I was in plaster for eight weeks.

Recovery: I was surprised at how wasted my leg was when the plaster was removed. Also the tumour had been near the ankle joint and as a result the ankle joint lost a lot of its flexability initially. After the inital healing process I had several months of physiotherapy which improved flexibility of the ankle joint.

Further Treatment: Over the first five years I had regular follow up x-rays, sometimes scans or MRI. I found towards the end of the five years that I was getting what I was later informed was “stress pain” – because the bone had ben weakened by surgery and the cavity left from where the tumour had been situated had not filled back in. So in 2001 I had further surgery – curetage and biopsy and bone cement was used this time to fill the cavity. Again I was on crutches initially and had phisiotherapy after the healing time. I continue to have follow ups but am currently free of recurrence 10 years later.

Life Now: My life is completely normal although I do have residual problems – nothing I can’t handle though! If I do any serious walking my leg aches afterwards (very uncomfortable) the ankle joint swells on that leg if I fly, in hot weather or if I exercise a lot. I tend to wear a support stocking on it and raise it when I sit down if its bad! I still wear stilletto heel shoes though when I’m going out!!

Thoughts and Hints for New Patients: Don’t panic! Being diagnosed is good because then you can start to figure out how to treat your condition. It was being in pain without being diagnosed that I found awful and depressing – there were days when I thought I would never walk properly again and nights when I woke in a muck sweat thinking I was going to die.

I believe knowledge is empowering so I recommend you find out as much as you can about your condition so that you can make informed choices. Make sure you’ve got plenty of support (maybe join a support group because they tend to have lots of information and expertise you can draw on.)Don’t just rely on your family and close friends because it can be hard for them too. And finally remember that: COURAGE IS NOT THE LACK OF FEAR – IT IS THE MOVING FORWARD IN SPITE OF IT. Take care.

In June of 2008, the tumor was resected, my arm salvaged and rebuilt, and I have a good functional result from that. I underwent a humeral implant w/ a total elbow Arthroplasty. The hand works great; the shoulder works great, although I have significant reduced ROM in the elbow joint. Being that no good treatment exists for this very rare cancer, I still underwent 4 rounds of chemo (Ifosfomide/etopicide a Ewings Sarcoma treatment), and 35 treatments of radiation to the tumor bed.

Fast forward to March 2, 2009. A CT of the chest w/contrast revealed 2 nodules in the lungs. (1) in the upper right lobe, medial to posterior, approximately 1.2cm x 1.7cm, and (1) in the lower left superior lobe. Both operable. On March 16 of this year I had the larger one removed in the right upper lobe, through a VATS thorocascopy procedure. It was confirmed as Metastatic Sarcoma in a De-Differentiated Cartligious Mixoid Stroma. A portion of that specimen has been sent to Rational Therapeutics in California, and is being directed by Dr. Jeffrey Morgan at Dana-Farber in Boston. A cell line has been started, and while I recover I’m flying to meet Dr. Robert Maki at Sloane-Kettering in Manhattan.

I’m about to enroll in a Phase-Ia clinical trial at Dana-Farber where we’ll see what results GDC-0152, a targeted molecular therapy drug has on me. Right now, and prior to this treatment, 16 different traditional chemotherapy drugs will be tested on my tumor to see the response. Being a De-Differentiated Chondrosarcoma, the cells are expected to be insensitive to the drugs, but protocol is required. They’ll also be testing a new inhibitor, due for release in April 2009. It’s protocol still not approved. I will be the first Chondrosarcoma patient to receive some of these new drugs. The paradigm in cancer treatments is shifting rapidly right now, and on the edge is where I must live.

De-differentiated chondrosarcoma at the distal humerus
Date of Diagnosis: May 2008
Age at diagnosis: 42
Location: Orlando, Florida
Surgeon: Dr. Douglas Letson – Moffitt Center
Oncologist: Dr. Robert Reynolds, Dr. Jeffrey Morgan (DFCI)

Diagnosis: I hurt my shoulder in the spring of 2006 playing basketball with my daughter. I went to the orthopedic surgeon, as I figured it was either a shoulder separation or rotator cuff problem. The doctor took x-rays, and said he thought it was shoulder instability, or weakened muscles from years of overuse playing baseball and volleyball. He prescribed several weeks of physical therapy that seemed to help for the rest of that year. I mentioned this to my family physician during my annual physical, and said that as long as I could handle the pain, that surgery should be avoided. He knew from personal experience that shoulder surgery was difficult and the rehabilitation was quite painful.

By the spring of 2009, my pain was increasing, and again I asked my family physician during my annual physical about when you decide it was time to take the plunge and have surgery. He asked me if the pain kept me awake at night, to which I replied, “Yes.” He told me then that it was time to do something. After my physical, I arranged to see the same orthopedic surgeon from two years earlier…figured I needed rotator cuff surgery.

X-rays showed bone growth on my scapula that wasn’t on the x-rays from two years prior, which indicated a previous fracture, so they wanted to do an MRI to see both, the bone growth and my rotator cuff. After the MRI, they said they wanted to refer me to an orthopedic oncologist (I didn’t know there was such a thing) to do a bone biopsy on the bone growth to be safe. It was diagnosed as a level 1 Chondrosarcoma approximately 7 X 7 X 5.2 cm tumor on my scapula.

Treatment: I was provided with two options. One was called the Tikhoff-Linberg procedure, where they remove my scapula and shoulder joint, and tie all the muscles back into my clavicle. The other option was a complete shoulder replacement with a titanium prosthesis. On August 15th, 2008, I had the complete shoulder replacement.

Recovery: I was placed in an immobilizing sling for 4 weeks, and then released to do physical therapy on my own, being that I had done physical therapy two years prior.

Life Now: Currently, at 6 months post-op, I have relatively good use of my arm. As long as it is below my chest and near my body, I can lift approximately 50-75 lbs. I will never have motion above my head, but can handle all of my everyday needs from my chest down. I have hopes of attempting to play golf within the next couple of weeks. I have tried to stay positive and keep attempting new things everyday.

Chondrosarcoma at the pelvis
Age at Diagnosis: 38
Date of Diagnosis: 2007
Location: Saratoga Springs, New York
Hospital: Dana Farber Cancer Institute/Brigham & Women’s
Surgeon: Dr. John Abraham

Diagnosis: I pulled a groin muscle coming off my horse in the spring of 2007. After two months of physical therapy, it was not getting better. If I did any exercise above and beyond PT, it was difficult and painful to walk. I visited my local orthopedic surgeon and he took and x-ray of my pelvis. You could see a mass on the left superior ramus down the tubercle almost to the sits bone. After an MRI and fill body bone scan, I was referred to an orthopedic oncologist in Schenectady. He initially thought it was fibrous dysplasia, and wanted to do a bone graft and bone biopsy, to make sure it was not cancerous. The biopsy came back chondrosarcoma.

I was a bit frightened, and did a lot of research on the internet. Most information I found strongly suggested I go to a dedicated sarcoma treatment center. Luckily, I have a friend who is an oncologist, who helped us get through the process of getting a second opinion somewhere… but where? Ultimately, I chose to get my second opinion and be treated at Dana Farber. Other than being a specialized sarcoma center and getting a doctor that drew a lot of pictures for me to help me better understand my cancer, the tipping point in our decision was that they have a specialist pathologist on site, one who eats, breathes, and sleeps sarcoma cells. From diagnosis to my second surgery, was 2 months. The time from my initial x-ray to my second surgery was stressful, but I was keeping busy with work, and learning as much as I could about chondrosarcoma. I did not have time to process the emotional aspects of cancer… yet.

Treatment: I had several MRI’s and a sample of my bone biopsy sent to the pathologist at Dana Farber. The samples showed grade 1 cells that had not broken through the bone walls. I also had a CT scan of my chest to make sure it had not spread to my lungs, and it did not. Chemo and radiation were not an option as the cancer had not spread. The first doctor in Schenectady (Dr. DiCaprio) had scraped the area to try and get most of the cancer out, when he was in there for the biopsy. He told me even if he was able to open me up further, the mass was too complex to get everything out, and the return rate of the cancer would be significantly higher than removing the affected portion of bone. Dr. Abraham also concurred with his findings after he consulted with him (they are colleagues). My husband I mad the decision to have the portion of bone removed. The doctor had to cut closer to the hip socket wall than he expected, but he was still able to leave me a few millimeters of bone to keep the socket wall intact. In essence, I had a hemipelvectomy, with muscle reconstruction, and mesh and alladerm placed in the “void” to keep my innards where they should be.

Recovery: The hemipelvectomy surgery was done in july 2007 and lasted about 8 hours, and recovery from it was a bit difficult for me. After reading some others experiences, it wasn’t as bad as theirs. Margins from the excised bone are super clear, and all cells tested from the bone came back as only grade 1 (yippee!!). PT started the second day in the hospital. Just getting up from the bed and walking around to the other side was such a chore. I knew that day, recovery would be a lot of work and a challenge. I was sent home after a week at the hospital. I had PT and nurses visit every other day until all my drains were out, and I could get up from a chair by myself. I was on crutches for a few weeks, then graduated to a cane for a few months. I got really depressed over the winter, as I felt isolated in the house, for fear of slipping on the ice. I did go see a therapist to work on my depression and talk about things. It has helped tremendously. I found I was flooded with a wall of emotions once I could not distract myself from the reality of cancer, through work and research. I also go for MRI’s and CT scans every three months at Dana Farber. I think that will be for two years. I do get anxious, and have the big “what if ” moments. But I try and work through them with my therapist. It has been a difficult road, a lot of crying, but I tried to surround myself with the best support group I could find (doctors, therapists, PT’s, family and friends). I still have a limp to my gate, but it continually gets better. The muscles that were affected may prohibit me from ever fully enjoying participating fully in a ballet class, or riding my horse the way I used to… but I can walk and ride my bike right now, and I am so grateful for those gifts.

Life now: I am starting to get back into the full swing of things with work. My stamina has increased over the months, and I am feeling more like myself. I am still on pain meds in the evening, so I can get some uninterrupted sleep. I still visit my horse, and hope to be able to lunge him by myself in a few months. Currently, I am strong enough to walk the dog by myself, and she is loving that! I am also relinquishing my husband from being the caregiver. He is so used to doing everything for so long, that I have to remind him that I can do more things around the house, and he can rest for a change.

Thoughts and Hints for Patients: My biggest helpful hint to patients is to talk to your doctor openly about pain management. Take your meds and stay on top of the pain. It is much easier for your body to heal. Don’t be afraid of becoming dependent on the drugs, there are so many ways to come off them now, or switch to something not as addictive. Also, give yourself time to heal after surgery. It’s ok to take those extra naps, I still am after a year. Oh, one more thing, right after a bone surgery, make sure you eat a good source of protein at every meal. Your body needs it to recover. One day at home, I tried to get away with only eating a pb&j, and I was soooo weak that afternoon. I didn’t realize how important it was until that day. I hope my info has been helpful to you, and I hope you find the best treatment for you, and recover to the fullest extent and enjoy life again.

Read more about Maria’s journey at her CaringBridge Page